Some days you just need to lie on the floor

The after effects of breast cancer can be overwhelming. It's been 1276 days since the cancer was removed from my body. That's 3 years, 5 months, and 27 days. You'd think, by now, I'd be really feeling great - that my body would have completely healed and I'd be living the good life. Surely, after this length of time, all the scars have mended and my body has learned to adapt to the physical changes, right? But that's not necessarily the case.

I'm normally not one to complain. Most days, even if I'm in pain, I keep it to myself. Why bother involving anyone else in my agony? They can't do a thing to fix it. Oh yes, the "I'm sorrys" help and those sweet empathetic pats on the back offer a little comfort but the suffering is mine and mine alone.

Some days are worse than others. Between the Lymphedema and the Fibromyalgia, I struggle. Neither of these two conditions will ever go away and that's frustrating.

The Lymphedema can be helped by wearing compression sleeves and using a programmable compression pump. The Fibromyalgia is helped by medication and by exercise, but I just long for the days when I used to feel normal. I haven't felt normal in a long time.

Before being diagnosed with breast cancer, my physical body was in fairly good shape. I did what I wanted to do despite the little aches and pains that came from daily exertion and growing older. I never really felt bad. Those days of good health were taken for granted.

So now I learn to temper my days and plan activities around how I feel. It's difficult to acquiesce to my body's needs, but I must. For some reason, I've always felt that I should be calling the shots, not my body but now, it's the other way around. My body dictates what I can and cannot do. Of course, I can always override the decision but it works out best if I listen and obey.

To be quite blunt, cancer sucks but even more than that, the after-effects suck. When I was told I had cancer, I was naive enough to think surgery would take care of the problem. For the most part, it did. The side effects didn't start showing up until several months later. Other than the physical and emotional scars, I never dreamed I'd have constant reminders of the trauma of breast cancer. Boy, was I dumb.

If you haven't been able to gather from my rant, today has been a difficult day. Last week, I decided to go off of the medication for the Fibromyalgia. I'd been experiencing some nasty side effects like blurry vision, loss of coordination, dizziness, and brain fog. There really isn't a specific medication that works for Fibro in case you didn't know. Doctors use various anti-depressants, anti-convulsants, or pain medications in an effort to alleviate the symptoms. While these medications help with serotonin uptake, overactive nerve endings, and sleep problems, they also bring with them their own parcel of side effects. It seems I'm always having to choose the lesser of two evils.

Lying on the floor seems to be helping. At least my body is prone and not moving. Tomorrow I think I'll start taking the medication my doctor prescribed for the Fibro again. It did help some with the physical pain and it did me have a more positive outlook.

If I could turn back the hands of time, I would have paid more attention to any and everything that could have potentially caused cancer to form in my body. But since I can't, I'll just have to learn to make the most of each day and be thankful I'm still alive.

Oh, my aching back and shoulder and ribs and hips and....

My oncologist is Jewish and that's pretty much all I know about his personal life. He looks to be in his mid forties and since the day we first met, I've been very impressed with him. The thing that's impressed me most about him is his attentiveness. On my very first appointment, instead of rolling up beside me on his little wheeled doctor's stool, he walked in the room, came over, shook my hand, and jumped up on the exam table scooting so close to me I could feel his breath on my face. I was sitting in a chair and my my oldest daughter was sitting beside me. Both of us were taken aback by his aggressive and playful nature. When he spoke, he leaned in really close and talked in a very calming tone. Instantly, I was put at ease. He's different than most doctors and I like that.

A few months ago, when I started experiencing overall body pain, I contacted him. I was concerned. For some reason, I immediately thought the worst...cancer in the bones, my worst nightmare. I never mentioned this to him but I know he must have suspected what I was thinking as I told him about my aching back, shoulder, ribs, hips, and shins. He called out some medication for me. He said it might take a few weeks before I'd get relief but I would get relief. I trusted him.

I've been on the medication for a week now and I've been able to tell a great improvement. The medication is called Cymbalta and is often used to treat depression, anxiety and to treat pain such as patients with Fibromyalgia experience. I was hesitant to start it. I don't like taking medicine but I was really hurting and I needed some help. I read every single side effect listed on the internet for Cymbalta. Some of them scared me but as with any medication, there are risks. I prayed and asked God to keep me safe. That's all I could do. I took the first dose. Within a few hour, I could tell it was working. I felt much better. The pain wasn't as severe.

The next day, I took the medication again. I made sure to take it at the exact time I'd taken the first dose because the instructions on the bottle said to do that. About an hour after I'd taken the second dose, I got a call from my doctor's office. I thought they were just calling to check up on me but the nurse said my doctor had wanted me to be on a 30 mg tablet instead of the 20 mg she'd called in to the pharmacy. Oops! She said she was calling in a new prescription. I wondered why he wanted me on a higher dose but understood about an hour before I was to take the next dose. I could tell the medication had worn off. The pain was back. Maybe the stronger dose will work better. I'm going to give it another few weeks and see if things level off. If not, I'll contact my doctor again and see what he suggests.

It's so important to know you have medical professional who really invests time and energy into your care but even more than that, it's important to know they're approachable. In the past, I would have suffered in silence but I've learned, over the years, there's no reason for me to be in pain if I don't have to be. There's no shame in taking medication to help when you need it. And adding one more bottle to my ever growing collection of medication isn't a sin either. I have an entire drawer in my nightstand dedicated to my medicines. It looks like my own personal pharmacy but each medication does something different to help me stay alive and keep me comfortable and I'm okay with that.

I don't like taking any more medicine than absolutely necessary. I am a huge proponent of taking natural supplements and using alternative remedies but sometimes a prescribed medication is necessary. I'm just thankful for a wise doctor who studies and understands what will work best for his patients. I am blessed to have a really, really good medical team and I know God had a hand in leading me to each one of them.

My aches and pains have aches and pains

Woe is me! Have you ever wanted to say that? Well, I've always heard it said by a cartoon character in distress or on an old black and white movie...not many people use the word woe in today's language but I couldn't find a more fitting word to describe how I've been feeling and that tiny little word did a pretty good job. This morning, even before I got out of bed, I was hurting. Every muscle, every joint, every bone in my body was hurting. I felt really, really old and I just wanted to cry. I have been having more and more days like this lately and it's beginning to worry me. I've read about a lot of breast cancer patients/survivors who've developed Fibromyalgia after surgery or treatment and I'm beginning to wonder if perhaps that's what's wrong with me. I hate to say it, but I hope it's Fibromyalgia and not a recurrence of cancer...

I looked up the symptoms of Fibromyalgia online and here's what it listed:

Fatigue - yep, I've definitely got that and lots of it
Muscle aches, either widespread or limited to a specific region of the body (back of the neck, chest, shoulders and lower back) - yep, got that
Joint stiffness and pain - definitely yes
Headaches - occasionally
Memory problems - yes, having more and more of those lately too
Brain fog - yep, feeling fuzzy headed all the time
Concentration problems - ummm, yes, I thought I just mentioned that a few minutes ago
Anxiety - sometimes yes
Depression - yep, having issues with that, too
Feelings of hopelessness and helplessness - there are days when I definitely do but I try to rise about it. 

So according to what I've read and the symptoms I've been experiencing, I would be willing to bet I've got Fibromyalgia. And if what I'm feeling in my body is Fibromyalgia, I don't like it one stinkin' bit. 

The best way for me to describe whatever this is would be to ask you if you've ever had a bad case of the flu before and if you have, magnify the way your body ached and hurt by about 1,000 and you'll know how I feel. And to add a little sugar on top, throw in nightly insomnia and you get a great recipe for total suckage. (Sorry, I don't even know if that's a word but it was a very descriptive word that just popped into my brain from a storage bank somewhere and it seemed to work well for me here.) 

Waking up in tears because you're hurting so badly is not the way to start the morning and having to pop two Advil Ligui-gels before your feet even hit the floor isn't good either. But you do what you have to do to make it work and what really, really sucks is tossing and turning all night long trying to find a way to be comfortable with your big swollen arms and the mountain of pillows surrounding you and then, when you finally do fall asleep you wake about an hour later to intense pain...now that's total suckage! (Sorry, I'm kind of liking that word and I'm sure I probably heard it from one of my grandkids or off of some Austin Powers movie or something...)

Poor Pitiful Pearl

So woe is me! Woe! Yeah...woe is me. I'm feeling like poor pitiful Pearl. (She was a doll minted in 1963 and had the most homely, pitiful face.) I've decided I need to talk to my oncologist about these symptoms because they seem to be intensifying. I don't want to, but feel like I have to just in case. I'm sure he'll want to do more tests and I don't want to have to go through that but I do need relief and need it fast. 

I don't know anyone who has been diagnosed with Fibromyalgia but I've heard there are medications that help with it. I don't want another medication! I'm on too many as it is. The internet lists a lot of natural supplements and herbs to help so I'll check those out until I can get in to see the doctor again. 

If you know someone who's been through breast cancer treatment or is currently going through treatment, please be sensitive to their descriptions of their aches and pains. We don't enjoy having to complain, really we don't...but sometimes when you're in a lot of pain, that's all you can do. Fibromyalgia pain isn't easily diagnosed. There are no specific tests to definitively point doctors to a sure diagnosis. So how do they figure out if their patients have Fibromyaglia? They go through a series of experiments and tests to rule out other things first and then, if there's no other reason for the aches and pains, they give a generalized diagnosis of Fibromyalgia. So Fibromyalgia is kind of the "catch all" diagnosis for all those aches and pains that seem to appear for no reason. A lot of people don't even consider Fibromyalgia a real disease and some doctors probably look at their patients as if they're hypochondriacs. But pain is real and we can feel it and we need a solution! I'm sorry to sound like I'm gripping and complaining, I don't want to be doing that. I'm just trying to share exactly how I'm feeling so you'll understand. Breast cancer is the gift that just keeps on giving... Lymphedema, Fibromyalgia...woe is me, woe is me. (And of course, not all breast cancer patients/survivors will experience these things but a lot of us do and it sucks...)